I have found when I am just exasperated by life, I get really quiet. Like hide in a corner, under a table in a dark room kind of quiet.
And if you’ve been looking for me, that’s where I’ve been since mid-August.
Mid- August, about 30 seconds after Meghan’s leg started to feel like it was ok to keep it attached to her body without the need to writhe in agony, is when we went for another one of her PTEN “routine” scans. Except nothing is routine when you have Cowden Syndrome.
So a few hours later when the report posted, we took a gut punch. There were definitely things to be concerned about.
And, when her gynecologist called the next day after reviewing the results it got a little harder to breathe. She said, even though the report suggested a 6 month follow-up, she wanted us to go in 3. And book her with a surgeon for a consult soon.
So we scheduled the follow up sonogram for the day before Thanksgiving. And we scheduled the surgeon(s) for her fall break – Thursday and Friday of this week. We will head into the city on the bus together. Not to see a show, or do some shopping, but rather to get her established at the Perlmutter Cancer Center, and learn our next steps.
Meghan and I have talked at length about the likely next steps. We just need the doctors to weigh in. We are not “getting ahead of ourselves” as some like to suggest. We have read more than our fair shares of scans and reports. We know when something is going south.
And so Meghan headed to her senior year of college in August with the crippling pain of her leg slowly receding, and the epic weight of this new news weighing her down like a stone hung around her neck.
Literally it felt like 30 seconds in between.
My beautiful girl continues to make life happen, she and Ella in their own, well-deserved apartment this year. But it is so hard to be free. It is so difficult to be present with peers who even if well-intentioned could not possibly relate.
My girl continues to interview for Physician Assistant programs and to proceed as if success is inevitable. Even though sleep eludes her. Even though her entire life seems to be in a state of flux.
I think about the people who tell us, alone or together that we should “reach out” when we are overwhelmed. And I wish with every fiber of my soul that instead those people, who are rightfully at a loss for words, would send a simple text to her. One that says you’re not as alone as you feel. One that says, it’s ok to talk to me. I will be here. And even if you can’t talk, even if you can’t form the words, I will keep checking on you. Because even though we are painfully aware everyone has something, sometimes the load is just too epic to carry alone.
When you have a chronic, cancer causing condition, there is always an appointment and a scan. But the longest time, the one that is the hardest and the loneliest, is the wait between scan and plan.
Those are the times where you just cannot focus on anything. That is when you are the most vulnerable and alone.
We’re not high maintenance people. But there is literally no rest for the weary.
We will be headed into the first of those 2 appointments midday on Thursday as we have done all the others – side by side.
Because when we are lonely, lost and overwhelmed we remember that we have each other, and a dad/husband who loves us both with his whole soul.
As we push through these next days we remain quietly…
We met with the surgeon for Meghan’s follow-up visit yesterday. He was so pleased with her, and with how incredibly hard she is working to recover. He is amazing, her orthopedic surgeon. He is humble, skilled, and focused, yet he speaks directly to her, meeting her questions with sincerity and validating her in ways that are literally life-changing.
You can go ahead and read that again. Validating her in ways that are life-changing. I use words to express myself and to tell our story, but I had gone largely quiet for a long stretch. You run out of words to reiterate pain. You run out of ways to explain to people that she is not better. You end up in a place where you are essentially making apologies for the discomfort your situation causes other people. You find yourself hiding.
There had been medication trials, embolizations and cryoablations, and an angiogram to attack this tumor. There was some lessening of the pain, but no relief for any real time. The pain always came back with a vengeance.
She stepped away from one thing after another in her life. Who can socialize in pain like that? Walking was excruciating, and driving was a formidable task since even sitting was painful. The pain wrapped her up in a tight ball. It mangled her hopes and messed with her dreams. It left her physically ill and a shell of herself. She put every ounce she had into maintaining her grades and surviving. People, some patronizing and some incredibly well-meaning suggested everything from her “just being depressed” to her being dramatic, to her needing to just push more. I’m confident not a single one could have managed an hour in the body she was dealing with.
When we went to see this doctor in mid-May (he’s been in the rotation since about 2015 and has done a few of her knee surgeries so we are not strangers) I expected he’d prescribe Ibuprofen and send her on her way. Instead, he sat at the MRI images on his screen and described the debilitating pain that the images he was seeing must be causing. He talked in detail of numbness, burning, pain with any movement, muscle spasms that this thing must cause… it was like listening to someone else tell me all the things she had been saying, and sometimes pleading with anyone to listen to. Validating her in ways that are life-changing. There is a power in being believed that cannot be understated.
The decision to remove this tumor was not arrived at easily. As a matter of fact, in 2019 we were told it was essentially inoperable as he would need to open close to 10 inches of her leg. The tumor at that point was 5.5cm. We needed the embolizations and the cryoablations to shrink it. And they did. But, they also left behind little pellets from the embolizations, and excessive scarring from the cryablations. That sent the pain into high gear as her body has never taken kindly to ANYTHING extra, however, those necessary steps took the tumor down to just under 2cm. But every time there was a surgery and she didn’t feel better she felt like a failure. My girl doesn’t like to fail at anything.
This time it looks like we are finally on the right path. The 2 square inches of muscle hollowed out of her leg included all sorts of things that just like Meghan, “don’t fit in a box.” But by removing them, and getting a clear margin on this benign tumor, the surgeon was able to close her 4-inch opening from the femur back up to the skin and leave only healthy tissue behind to do its thing.
The days following her surgery are chronicled in the last few posts, and etched permanently in my soul.
But there has been progress. There is a fresh new Physical Therapist who is working hard to ensure that the scar tissue Meghan’s body loves to overgrow does not get out of hand. There is an increased range of motion. She can walk some distances unassisted on her best days. On the others, she’s furniture-dependent, but we’ll take it.
There are still muscle relaxants, but less of them. Some days the Advil is at 400mg doses and other days 800mg. She started sleeping in her own bed (upstairs) this week! 🙂
Some days are better and some days really stink. There are ups and downs. There is Physical Therapy three times a week. There is the EMT course three nights a week that she, by her grit and raw determination is still making happen.
So I leave you with this progress note. And thanks to those of you who have consistently checked in and followed us through this dark time. There is nothing like sitting in the depths of despair to shed clarity on who your people truly are.
We got home from the hospital late Friday of last week. After 5 days and 4 nights-her longest hospital stay since she was a toddler, we trekked from Long Island to Staten Island, a 35-mile journey that even at a carefully selected 8PM still took us 90 minutes.
I’m certain we were navigated through every single pothole on the traffic-filled trip. I dodged every self-absorbed speeding lunatic while doing my best to keep from jostling the car too much. I teetered between fervent prayer and fierce anger that I took out in a few temper tantrums at my steering wheel. My knuckles were white (and a little bruised) when we finally arrived home.
While we got her washed off, and I took the most necessary shower of my life, I let a few things sink in.
The week began to replay in my mind and I started to grasp the gravity of what we were in the middle of.
Somewhere between The Waiting Place and Agony I left out that incident in the recovery room. The one after she woke up screaming, they gave her some IV pain medication and something happened. Her monitors are never comforting, as something is always beeping, but I instinctively got Ella out of the way as I watched her oxygen saturation start to dive and hit the 70s. Four of the most authoritative badass women I’ve ever seen moved in a way that assured me they had done this before. They had the oxygen out and there was water and something about making it moist. To be honest I don’t care enough to even look it up. All I know is within seconds of them arriving things went back in the right direction. She slept for another few hours in an oxygen mask and I stared at that monitor like it was my job. That entire incident could not have been more than 30 seconds – but I can tell you everything about that tiny area in the post-op unit. I can feel myself standing there… watching… terrified.
It wasn’t the first scary thing that happened.
The amount of narcotics it took to keep the pain at bay was flat-out disturbing. That, combined with a baseline of POTS which keeps her blood pressure often low and her heart rate often high, caused chaos every single time someone came in to take her vitals. My notes have her 6/5 early AM pressures at 68/37, 74/41… her high that day came in at 91/57. This meant that every single time someone came in, the patient care aide would take the pressure twice. Then they would look very concerned. And when her pulse ox showed at a very unimpressive 94-96 they would get the nurse. The nurse would then take her pressure and page the doctor/ and or the pain management team. Ultimately they would wake her, shake their heads, and repeat the same cycle. Every 4 hours. For days.
There is no solid reason yet as to why her pressures were so low. Like so many other things in Meghan’s life, eventually, people just shrug their shoulders.
That hospital room, with the hum of machines alternating with wails of pain, it was a lot. And I was happy to wash some of it off in that shower.
It is good I can recover quickly after a shower because I am glad I was awake when I set up to review the 7 medications we left the hospital with. It was at that moment I processed why the nurse had asked me if I knew how to use Narcan. I had answered her so matter of factly, she must’ve thought I knew more than what I had seen on a random television show, and she was comfortable when I said “one spray up each nostril.” I guess I was in a haze. I remember asking if it could hurt her, and she said, when in doubt give it. Like the EpiPen training we get annually at my elementary school I had thought, trying to normalize the fact that I was about to drive 90 minutes with my child so drugged up that I was now carrying medicine in case of an overdose.
I laid everything out by my computer and did what I always do when I’m nervous… I organized it into a table. This was likely the most important table of my life. I felt alarmingly unqualified and flat-out terrified.
It didn’t stay nearly this neat as I planned out how to alternate prescription acetaminophen with ibuprofen while separating hydromorphone (every 4 hours) with diazepam (every 6 hours) by at least an hour because both can lower her already low blood pressure. That’s where the Narcan came in. The methocarbamol was for breakthrough muscle spasms but no more than every 12 hours. The Zofran… well because narcotics and nausea…
The first few nights there was something at least every 2 hours. I got into an every 3 hour routine soon after but it definitely was the worst math word problem I have ever solved.
Every simple task was a hurdle. Walking on the crutches when she was so drugged up was flat-out dangerous. Laying on her back with a 3-inch incision on the back of her thigh was virtually impossible. Sitting was not an option as the hip is not allowed to go to a 90-degree angle. The brace created to help with the hip was a poorly designed disaster. But, in fairness, this tumor was rather uncommon.
These last two weeks have left me speechless more times than I care to count.
The day after we got home when I went through the mail, the formal denial of any post-operative stay arrived at my house. Years of experience with this caused me to barely flinch. I three-hole punched and filed it. Today in the mail came this notice, the one they sent after reviewing her POST operative file. If you have any history with hospitals you know this speaks VOLUMES…
Sometimes in the night when she is asleep next to me in the bed, I just stare in awe of all she has endured and continues to endure. I pray for guidance to keep her heart soft and her will strong. I talk to every single angel we have and beg them for signs they are watching.
And then, when I still can’t sleep I remember that her story, this crazy, often flat-out unfair and unreal story will somewhere in her future serve her as she brings her whole life of experiences with her into her own professional life as a physician assistant.
There is increasing time between the terrifying spasms. That’s what I’ve got for today. That and some photos of a really cute Ella who kicked some major butt for 5 days and 4 nights… yeppp she stayed with us!
Somewhere in the middle of Tuesday night when they were pulling blood pressures like 68/37 I started to adjust my head that we were not headed home Wednesday. I had hoped, planned and packed for Wednesday, but it was to be another “tuck and roll” kind of experience.
Overnight Tuesday was a different world from Monday. It was not because the pain was gone by any means, but because the pain care team here worked until they got her to a place where she could rest. You can’t heal if you can’t rest.
The problem with all these meds is many tend to lower blood pressure. Her’s runs low anyway. Those two things combined together to create a bunch of nervous PCAs, a whole lot of “redo” action by the nursing staff, and a bunch of pages to ortho and pain management. The good thing is she slept through most of that.
Over the last few days we have pieced together where a lot of the ancillary pain is coming from. Monday’s surgery was over 3 hours and had to be done with her face down. The bruising thought her chest area is extensive, and the numbness on the front of her legs can be attributed to this. Those things are likely to fade away well before the leg.
The leg though…
This surgery, although we knew it might be coming, kind of snuck up on both of us the week after Meghan arrived home from the semester.
This leg, and especially this tumor had been causing her grief since 2019. At the time she asked the orthopedic surgeon, who has been a regular part of her team since 2016, for an MRI of her upper leg. He agreed because anyone who knows Meghan more then 5 minutes understands that she knows her body, and something there was giving her grief.
When the scan was reviewed and the doctor started to brace us for an unusual finding, I remember Meghan saying, something to the effect of ‘Thank God you see it.’ As she showed him with her finger exactly where this beast was buried in her thigh. He was impressed that she was so on point as he verified with the MRI images, but not surprised. She was grateful for the validation that she was feeling a real “thing.”
The next few years we tried everything to get at this beast. First we tried ignoring it. Then we scanned. Then it grew. We asked about removal and were cautioned that it would be akin to “filleting” her thigh through a huge open incision. That was definitely not choice one.
By the summer of 2021 as she was preparing to leave for college, she had reached a place where this precariously placed tumor (in between the femur and the sciatic nerve) could no longer be ignored. We got a hematologist with an interest in vascular malformations to see her virtually the week she was leaving. She headed off to college with a script for lyrica. We tried to go slowly but relief wasn’t coming easily. Still, she did her best to do the things college students do, for better or for worse.
She is the epitome of, ‘Those who say it can’t be done should move over for the people getting it done.’
That year was for studying and for swimming and for trying to titrate a dose of this drug. It would likely not have mattered if it was a magic bullet (it was not) the side effects were just too much and by 2022 it was ditched and there was s new plan and a new interventional radiologist.
In 2022 and in 2023 – he worked to shrink this beast with cryoablation.
It shrunk the tumor a solid amount- by more than half.
But the pain. It has proliferated every aspect of her day to day existence. It is hard to know – until you know. Chronic pain changes you. This beast got in the way of anything that required too much moving, sitting, or just about anything else. It’s hard to be 20. It’s harder when you are trying to relate to people who don’t need pain meds just to exist. It’s like you’re side by side with them speaking two totally different languages. At some point you either learn the other language or move on. Very few people are fluent in pain.
This transition Meghan and I are working on, where I am trying to transition her into primary responsibility for her care, it is a delicate one. This year was difficult for Meghan for so many reasons, but the reason swallowing her up was the pain. I knew the call would come, and it did.
She called and asked me to schedule and MRI – just to see what was happening. She was stating that another cryoablation was not the path she would go, but she reached out to her interventional radiologist to try to troubleshoot the images. From his lens the tumor was markedly smaller, decreased by almost 2/3 from its original 4.5cm. He could not figure out why her pain was so much worse. He called and spoke with the orthopedic surgeon.
We got word that we should head to ortho to review his thoughts on the most recent images. We were expecting advil 800. He led with – Let’s get it out of there.
Tuck. And. Roll.
When it was almost 5cm he dared not touch it. Now at its current size he thought he could get it. One of the smartest men we will ever meet stared at her MRI images and described the constant pain caused by the location of this ugly beast. HE said to her, all the things SHE has been saying. He said that is in a terrible spot, between the femur and the nerve. He spoke of his access to nerve monitoring technology to ensure the motor nerves were not damaged. HE said she won’t feel relief until it’s gone and cryoablation took us as far as it could. I swallowed hard.
I knew at some point she’d need to let him try. Too many things stood to get BETTER if she got THROUGH to the other side. The surgery now on a markedly smaller tumor was going to require a smaller incision and made it seem attainable.
And before I knew it the surgery date of June 3rd was set.
The only way out is through.
So here we are. Night 3 in the hospital. Another additional dose (on top of her heavy regimen) just got administered as the pain started to creep out of control again.
She needs to move before she can go home. She knows. She needs to move because it is just better for you. She know this too. And she will, but she can’t yet.
There is no frame of reference for this surgery. It’s nothing typical. There is nothing to base the experience on. Just Meghan. We have to let her body lead.
Occupational Therapy got us through a wardrobe change and a move to the chair in the room.It was a 20 minute session of activity. The muscle spasms on the back end of that, would have been enough to make me want to stay still forever.
But tomorrow she will move again. Residents and rounds and PT and OT will visit. The pain care team will come too. What I’m almost certain will not come are our discharge papers. And that is ok. As much as I am desperate to leave, I can not take her home too soon. There are times in our lives where we have to tuck and roll. These times are no strangers to us.
On Monday the surgeon dug in, literally to the bone and extracted two inches of muscle along with this tumor beast.The hope is that once this very ugly painful time passes, that maybe the tumor pain, and the chronic sciatica, and all the other ugly after effects of this beast will go too.
But,not today. And not tomorrow. I am trying my hardest to trust the process….
I am working on managing expectations. My goal is to find a sweet spot in this parent recliner…
The last of the dilaudin is in. That is my clue to close my eyes….
The recovery room is the land of mixed emotions. So grateful to see her on the other side of another surgery, yet so terrifying to see her pulse ox dip as they race to get her on oxygen.
Gutting to watch her screaming in pain until finally a cocktail of pain meds knock her out completely.
She should rest. After squeezing in her GRE from 9:30-11:30 she fired off 6 applications to Physician Assistant programs before catching less than 2 hours sleep.
That sense of urgency is our 24/7.
We left home at 4:30- arrived by 5:30 and was in surgery by 7:30.
Three and a half hours later, we got a decent- yet not perfect report and I sit by her bedside… waiting.
Waiting to see if she’ll breathe without oxygen the way she needs to.
Waiting to see how they’ll manage her pain.
Waiting to map out the road to recovery.
Waiting.
He got the tumor. But with it went some healthy muscle too. He got the tumor, but the SOB had a vascular component too.
He got the tumor… but…
There’s always a but.
For now we sit. And wait. And HOPE for all the best answers to chronically complicated questions.
It’s an actual question people ask. And I guess it is a fair question for most people. But, we aren’t most people. We are 1 in 200,000 tumor growing Cowden’s Syndrome people.
The question makes everyone in the room uncomfortable because when they start to realize the over 20 surgeries for my girl alone will NEVER fit on the three lines they allow, they ask me to prioritize. But, I have. And the are all important. I even print them out so they don’t have to rewrite them.
It’s like the medication question. Yep. There are a bunch. Yep. They all have value. Yep. They all have side effects. Good for you that you have never even taken a Tylenol. God Bless you and your healthy pain free body. But be careful not to imply that it is even a choice not to control the unrelenting pain somehow. I mean, you want us to behave like decent humans right? Because you can’t have us pleasant and medication free, If you want to be sure maybe we can place a giant tumor on your sciatic nerve. Or let you contend with the after effects of a high flow AVM in your knee, and the shifted patella, or in my case a boatload of hemangiomas on your spleen, and bodies that are just off sides 24/7/365.
I wonder how people would react if I started asking the same question of them…. “What do you mean you haven’t had ANY surgeries?” People find our lives odd. They like to throw well intentioned platitudes. “Is she better now?” “Is it fixed?” “She’s so strong.”
Yep. We’re strong. The weight is heavy. Oppressive at times. The trauma is real and ever present. And to the well intentioned “You should see a therapist…” yep, we’ve got it thanks.
But, no. It’s not “fixed.” It’ll never be fixed because the broken PTEN gene proliferates every cell of our bodies. It has taken a toll on our bodies, and will continue to do so. Active surveillance for cancers and tumors that are flat out likely to grow and show up is just our reality.
It has taken a toll on our spirits. Differently, yet a significant toll on both of us. We are a lot. Chronic issues make even the most well intentioned people uncomfortable. Pain changes you. Trauma changes you.
This life can be so lonely. It is hard to relate to experiences and people when your reality makes most uncomfortable. The isolation becomes easier to manage than the abandonment.
We are a lot.
We are often defensive. Being left behind so often will do that. Being judged too early and too often will do that too.
I think today as I wait for a surgical update I am just tired.
We arrived at 5:30 at 7:30 they rolled her away from me.
Our hopes and dreams right now rest on the resection of her thigh muscle to remove a tumor situated somewhere between her femur and her sciatic nerve.
As I sit here with Ella her service dog, praying and waiting, I can’t help but choose hope.
This girl, well woman, is a force to be reckoned with. The number of appointments she has crammed into the last 3 week is ridiculous. She’s taking an EMT class 12 hours a week with her dearest friend, and took the GRE for the second time at 9:30 PM LAST NIGHT, then submitted 6 applications to physician assistant programs for next fall before closing her eyes for about 2 hours.
She is so determined to overcome all the chaos that has been her life and do BETTER for other that she inspires me.
Join me in HOPE and prayer for the successful removal of this tumor with complete and total nerve function in tact.
Because, What if it all works out?
#beaitngcowdens
A few photos from our pre-op selfie tradition this AM…
That’s why it was intriguing and exciting when Kristin Anothony from the PTEN Foundation contacted me last spring and asked me to share my story on a podcast. Kristin and I have been in touch since before she started the foundation that now represents all of us.
We met Kristin in person in 2018 when she flew to New York for a dinner where Meghan was being honored
We were interviewed for episode 2 of a 5 part podcast. The link is here…
I am constantly humbled by the number of people who interface with this blog. It is mind-blowing to me that people either stumble across this or come here on purpose to learn what our PTEN journey has been.
Back when we were diagnosed in 2011 the internet had sparse mentions of PTEN mutations or anything related to it. But, since I was a mom on a mission my first goal was to create a survival network of others who knew this journey. I connected with Australia, Virginia, California, Colorado, and Alabama. I later found others in places across the globe. And, even though we were all too far for gatherings, in many ways they became my closest confidants.
People dismiss social media, and as a teacher and a mom, I have seen the damage it can do. However, as a rare disease patient, I literally cannot imagine my life without it.
When a diagnosis that is new, scary, and uncertain comes your way, you need hope. You need success stories. You need to know that although it is hard, so hard that sometimes it seems impossible, you are not alone. Like so many other things in life, when used properly, it is good for us. When used in the spirit it was intended social media can be our lifeline, giving us the connections that we so desperately need.
And sometimes if you are lucky, one of your internet lifelines travels to New York from Virginia and you get to hug her in person…
Margaret and I in November 2021
And if you are not that lucky, well, you still are. Because we have an entire team right now, climbing Mt. Kilimanjaro in Africa to raise awareness for us, and to raise awareness of PTEN mutations across the globe.
The rest of the podcasts are linked here. The content is amazing, from Kristin, the founder, and president of the PTEN Foundation, to Ashley and Keegan, a PTEN mom and son who amaze us every day, to Dr. MacFarland and Dr. Frazier, much-needed and appreciated medical professionals helping us navigate this wild ride.
As we head into World Rare Disease Day this week, I encourage you to share your story. Share it here in the comments, or share it wherever you feel heard. It matters. You matter.
The primary care, a title he earned through the path of least resistance, abruptly left the practice in December. There was no notice, and I found out quite by accident. But, none of that surprised me. Very little surprises me anymore.
After 12 years of a formal diagnosis, and a whole lot more than that at too many doctors all the time I just shake my head.
Don’t let it define you they say. Except it takes so much time. All the time.
We need someone to check the boxes. In theory anyway. We need someone with a license to order the diagnostics so we can avoid a few specialists. This PTEN team is often left without a captain. I sometimes feel like I am playing all nine positions at once, and the irony that I cannot throw or catch is not lost on me.
I’ve been on the phone for 2.5 hours trying to get a refill on a medication that my college-age, currently out-of-state girl has been taking for years.
The pharmacy can’t fill it without a doctor. I get it. I called the office (HIPAA on file is my lead in… all the time) and they can’t fill it until she sees someone. The last refill was in November. She’s not due home until the 7th of March. I offered to make the appointment and asked them to review her chart and authorize it in good faith.
No. And that was a hard no. A conversation ending block from a medical assistant who undoubtedly is following rules. But the rules are made for situations that fit in boxes. We pretty much live in the basket of the shredder. There are no definable boxes anywhere in our lives.
So, I made the appointment for March 7th for the two of us. Her medication will have lapsed by then. And when it is called in I will end up paying an extra $30 to expedite it. It’s not about the money really. It is that that fee is for people who wait until the last minute. I don’t.
We will go on March 7th together. I already met this doctor at my husband’s appointment to transfer primary care. I asked her if she was willing to take on two patients with PTEN. She looked a bit like a deer in headlights but reluctantly agreed.
I was online this morning trying to print out a guide for physicians who have no idea what our disorder is while trying not to be frustrated that we are once again caught up in the red tape of a system that requires the two of us to see ANOTHER MD who has NO IDEA what we need, so we can tell them what we need, so they can make us jump through more hoops to get it.
I’m grumpy.
I get that the rules have to exist, for the 90 percent of us without rare diseases. And, somewhere I understand why the other 10 percent of us have to suffer.
But, just because I understand it doesn’t mean I like it.
I am a March-August kind of girl. I love warm weather and lots of sunlight. Long walks are my favorite. There is nothing that soothes me more than putting on a pair of sneakers, putting my music on, and just going.
I find the fall stressful. Maybe it’s years of being a teacher. There is hopeful anticipation about school in September, but the organization and logistics take forever, and the fall germs are just… a lot.
Before I have time to look up, the days are getting shorter, the leaves are falling, and it is time to pull out the sweaters.
I go through the motions dutifully, cleaning and organizing, but I lack the excited anticipation people have when they smell pumpkin spice and start to see their breath. I just don’t get it.
I think I was always this way, but in fairness, so many emotional events in the fall and winter may have given me the final shove into my aversion for those seasons and bolstered my affinity for my spring allergies.
Given all that, it might seem contrary to say that we decorate early for Christmas, but we do.
Remember, I love the light.
Our tree is up by Thanksgiving, and the lights around the house are on every possible second. I love buying and wrapping gifts. I take comfort in our advent calendar and the excitement of the impending arrival of the baby Jesus.
My faith anchors me through the tumultuous turns life tends to take. It keeps me grounded and focused on the fact that this life is merely a stopping point on a journey to forever.
I grew up in a church. I spent so much of my life there as a child, and a teen that I could navigate the building with my eyes closed. I stayed at that same church after my husband and I met, and it was there that we married and had our daughter baptized.
And as ironic as it is, it is the place I had to walk away from when our worlds got turned upside down with all things PTEN and Cowdens Syndrome. I had to walk away from the place to continue to nurture my faith.
When you grow up in a community of faith, it is hard to accept that reality. I miss weekly services, Angel Trees, and Christmas shows. And sometimes that disconnect can make the dark days extra hard. Yet, in the apparent contradiction that is often reality, my faith has continued to grow through the years.
So, this morning my new normal involved my air pods, my iPad, and my orchids.
Today I “went” to church in Buffalo and in Sarasota, and I never left my house. I sang and prayed and smiled and pondered through Western New York Church Unleashed, and Faith Lutheran Church in Sarasota, Florida. The pastors are comforting and familiar, especially Eric, my brother-in-law in Florida, and also Roger, Jeremiah, and Steve in Western New York whom I have never met. The same internet which often isolates us from each other, keeps me connected to my faith through Advent and beyond.
I took some time with my orchids. My beautiful, perfectly imperfect orchids, that I feel a strong kinship with. Somehow, despite the odds, and without any traditional interventions, they blossom and grow in the most amazing ways.
I spend too much time alone and find it easy to be lost in, and overwhelmed by my own thoughts. Cowden Syndrome is ever present in our minds and bodies, even when the medical drama is on “pause.” The anxiety and anticipation of a lifetime of justifiable worry can make so many things, just hard.
Today I was reminded to give thanks in all circumstances. I was reminded to pray without ceasing, and I was told that you can have joy in your heart, even when you are not happy.
Life is a contradiction. Emotions yield guilt way too often. But, I have learned that feeling all the feelings is the only way I will survive and thrive in this crazy life.
I do not like the winter. I will never enjoy the darkness. I love the lights of Christmas and I eagerly await the birth of the baby Jesus.
I promise to stop and smell the “orchids” while anxiously waiting for the first sneezes of spring.
Wishing you and yours peace throughout this season.
That’s what I thought to myself when she first told me. That, along with a million other mom thoughts that happen when your 20-year-old declares that a new tattoo is coming.
However, she and I have developed quite a solid, trusting relationship through the years.
We are at a place where she can know that I’d rather she didn’t, but I can still be happy for her when it turns out exactly as she needed it to.
She understands herself, and that is a life goal many never achieve.
When I asked her to put the reasons behind the dragon, she sent me this…
I’ve been poked, prodded, and cut open my entire life, and I’ve never wanted any of it. I needed to do it to survive.
I am 20 and covered in scars that bring those memories back every day. So, I decided I needed to pick what happened to my skin for once, and that’s how my love for tattoos began.
It became a way for me to tell my story and show people what I was about when they saw me. I got to define myself and what I wanted to see on me as well as what I wanted others to see.
This time I picked a medieval dragon design, and I am over the moon with my artist and how it came out.
I spent a lot of my youth feeling weak, broken, and frustrated I couldn’t protect myself, all while reading through fantasy books faster than most could think. So, I got a dragon done because it was always my favorite creature and it was the epitome of strength, with impenetrable scales, and fire breath that meant no one could mess with it. I want to be that, and it’s my everyday reminder to work to a place where I have scales strong enough that no one can mess with me and fire breathe that allows me to take care of myself and keep my mind and body safe.
Oh, and the three stars are for our family of three…
It is impossible not to be proud of her, and grateful for the relationship we have.
Cowden Syndrome can be very cruel. But, my warrior kid is out there every day…
beatingcowdens 